Wednesday 18th August
Josh had a reasonable night thanks to the new drug - Risperdal. It’s not licensed for use on children, but that’s common for a lot of the drugs they use here and all it means is it hasn’t been officially tested on them in huge numbers – hopefully not on Beagles or bunnies either. Anyway, from what Claire said it took longer to kick in than she’d expected but it has an accumulative effect, so it should work faster as the days go by. It’s a short term solution, but given that nobody’s sure what the problem is exactly we’ll happily settle for that. At home, it’s a bright, sunny start to the morning for about an hour or so and Joseph and I play footie on the deck before breakfast when it starts to cloud over. It almost goes without saying that he’s being well looked after at a friend’s house today and we remain grateful to everyone out there for all the support we’re being given. It’s decidedly overcast in London and gone 1pm before I arrive at the hospital. I’d have been earlier if I hadn’t stopped at the Harry Ramsden Express at Euston. All I wanted was chips and curry sauce (it’s a Northern thing) but apparently this entitled me to a free drink with their meal deal. Pleasantly surprised I plumped for a Tropicana but the bill was £6.49 which meant my free drink cost me £4. It took 10 minutes to explain this to the woman at the till who just kept pointing at their meal deal sign and repeating the price over and over again in an ever louder voice. English wasn’t her first language, to be fair, but basic maths seemed to be an even bigger struggle. Call me old fashioned, but I like people on tills to be able to add up. Claire is deep in conversation with the resident pharmacist when I arrive on the ward with tiny splashes of curry on my t-shirt. They’re discussing theories on Josh’s agitation and whether it’s drug related or down to his encephalitis. The conclusion is that it’s impossible to say. Josh is fast asleep and settled. He is even more bruised than when I left and both eyes are heavily swollen now. Whilst he has the face of a boxer, the white cotton gloves on his hands make him look like a snooker referee. Claire bought them so he could scratch himself without actually breaking the skin and they look rather fetching. I can just see Josh auditioning on the X Factor as a Michael Jackson tribute act next year. There’s so much to catch up on regarding drugs and theories and next steps that we don’t quite know where to begin so we don’t even try and go for a quick walk to the Brunswick Centre to buy more gloves for Josh instead. When we get back, one of the doctors appears and we have a good discussion with him. A meeting is scheduled on Friday for Claire and I to have a chat with the main consultant and the team at 4pm which suits us just fine, but will mean a mad scramble for the consultant to make his train back home to Bristol before rush hour. Everyone is so supportive here and you can openly see their love for Josh and how much it pains them to see him in this kind of state. The rest of the day proves uneventful with Josh sleeping soundly propped on his side for the next few hours. It’s only at 6-30pm that I notice something on the back of his head that’s wet and brown. Pulling the pillows away reveals the world’s biggest poo which has somehow slipped out from the back of his nappy and spread up the bed like some bizarre alien creature with a life of its own. Yes, it’s ‘The Blob’. It takes us nearly an hour to change Josh, his nappy and sheets, wipe the bed down and clean him up. After that he doesn’t really settle at all and I’m left holding his gloved right hand for 4 hours to stop him pulling out his oxygen prongs. No TPN tonight as his Potassium levels are high and his formulation was made up before the results arrived. He drifts off 30 minutes before his next dose of Risperdal at midnight which shoud calm him down for the rest of the night. Not so, as he wakes up wet at 2am and it’s gone 4pm before I settle him enough to crawl back to bed. He’s clawing away again at 6am for an hour or so again before he finally tires and I grab a short catnap.
Thursday 19th August
No rest for the wicked, nor the innocent for that matter. Josh is moaning again by 9am and I try and calm him down unsuccessfully for the next 4 hours. Josh must be far must far more shattered than I am, but shows no signs of flagging until early afternoon. During our fight, I take him off his oxygen completely and he manages to hold his own. It’s astonishing how quickly he’s shrugged off the pneumonia this time. The pain team arrives to check him, but it’s not a pain issue as far as I can tell and all I can think about is whether we can increase his Risperdal before tonight. A doctor pops in next and says the plan is to reduce his steroids further if his skin remains good. His kidneys are coming under increasing pressure from all the side effects of his drugs and they’re going to go through the list of what he’s currently on and reduce or eliminate whatever they can. With Josh settled it takes me an hour to write the first10 lines of this blog as I keep drifting off and finding I’ve written complete and utter nonsense which then degenerates into line after line of random letters. No change there then, I hear you say. I’m woken by another of the doctors who reiterates the plan and we then have a discussion about whether or not to try the alternative stem cell treatment that’s been developed in The Netherlands. In theory it will fight Josh’s GVHD without the use of steroids, which in turn will mean his immune system can build itself up enough to fight the virus or viruses in his brain. My initial reservations are beginning to disappear and we’ll talk further on Friday. By the time dinner arrives, Josh is awake again and crying out so I have to eat it one-handed before it goes cold. It’s beef curry and whether it’s because my standards are dropping or the food here is improving, it goes down a treat. I generally wash the dishes in the room here before taking them to the kitchen mainly because I don’t like Josh to be on his own for long, but partly because I prefer to avoid other parents. It’s not that I’m anti-social ( well, maybe a bit…) but our situation is very different to the others on the ward and you don’t really want to tell them how it can all go so wrong. You end up asking about their child instead which usually means you get to hear their life story. Now when somebody’s talking about their child’s illness it can come across as pretty heartless if you suddenly walk away, so you end up stuck there all night if you’re not careful. One parent in particular would always launch into a long winded story about their trials and tribulations every time he spotted me washing up. Almost every other sentence was ‘ And to cut a long story short…’ only it never did as he would go into the most minute detail. Best just to smile, dump the clean dishes and scarper, I say. Not wanting to bore you with our own stories, I won’t be describing Josh’s agitation anymore. He’s settled at the moment. You’ll know by now how distressing it is for all of us and how never ending it’s become. Best guess is it’s down to cerebral irritation and won’t stop until his body fights the virus causing it which could be weeks. I’ll let you know when it improves. With a potentially long night ahead I’m signing off now before watching the last two episodes of The Wire season 5. Then it’s hopefully to bed before 8pm for the first time since I was Joshie’s age…
Friday 20th August
Last night was ‘a good, good night’ in the words of the Black Eyed Peas and both Josh and I caught up on our beauty sleep. He went the whole night without needing oxygen which hasn’t happened for weeks. Not wearing a mask or having a force 10 gale blowing in his face must’ve been a huge relief. My sister is down from Southport today with her husband who’s visiting a patient or attending a meeting near Euston. She’s keen to see Josh but is only allowed on Fox ward if I can get permission as she’s not our named third carer. Given that they were a bit funny about Claire and I co-habiting the night he had his first seizure, I wasn’t too hopeful but they’re fine with it. I guess the fact we’re brother and sister and not from Norfolk helped put their minds at ease. Auntie Judy arrives just as we’re changing and turning josh. She last saw him the day before he came to GOSH and was shocked at how much he’d declined then, so it must be really hard seeing him in this state. After Josh has been weighed in the hoist, we try to settle him down but it takes several hours. We have a good old chat once he’s asleep and she leaves with Uncle Clive who arrives just before Claire does. Seeing them was great and really made the day go faster. Our scheduled meeting with the BMT team starts early and there are no real surprises. They just wanted a chat with us given how desperate things have been over the last few days. We talk about the importance of him not being distressed unnecessarily. They feel Josh needs a 4 week run or so where they don’t expect any improvement but he remains well enough to rebuild his immune system to battle the virus in his brain. His steroids are being lowered which will help, but the Dutch stem cells remain an option too. The virus in his brain is called JC. There, I’ve told you now. It’s named after the initials of one of the first people to get it which is bizarre as it’s Josh’s initials too – as well as mine and Joseph’s for that matter. It’s very rare and mostly seen in HIV patients. Most of us have the virus but it’s only activated when your immune system is virtually non-existent which probably happened when Josh’s steroids were doubled. When I spoke to the Professor of Infectious Diseases here, back when they first suspected Josh could have JC, he told us it was almost always fatal but highly, highly unlikely that Josh would have it. Well, he does have it but recovery is possible. HIV patients cannot rebuild their immune systems. Josh can, provided we can cut his immuno-supressive drugs without him becoming ill again. The VZV (chicken pox virus) is no longer in his blood and hopefully gone from his brain too because responds to certain drugs. If his encephalitis had been purely due to that he would be well on the road to recovery by now. As it is, there’s still a long way to go. We finish the meeting 5 minutes after it was meant to start so everybody’s happy and then I’m off to pick Joseph up from a friend’s house where they invite me to have dinner with them. The temptation is too great to resist and I tuck into spag bol and garlic bread while Joseph plays football with two older boys. I join in later, much to Joseph’s dismay, although he cheers up somewhat when we win. It’s late when we get back and he’s shattered and fast asleep soon after thrashing me at Tumbling Monkeys and a listening to a bedtime story.
Saturday 21st August
Claire’s news from hospital is that Josh is a bit more settled today and opening his eyes more. She says he looks like he’s trying to respond and she thinks he recognizes her. He’s unable to speak still, but when she asks questions and tells him to blink if he understands he does it several times. It’s too early to say if it was just a coincidence, but we’ll be watching closely over the next few days for any improvements. Meanwhile, Joseph’s wonderful social life continues with a party in the afternoon. Under normal circumstances I’d have quite liked to have stayed and had a natter but it’s difficult to hold a normal conversation with people these days. Friends are fine as most of them are aware of our current situation and read the blog. Strangers are tricky though, as one of the first things they ask – especially at children’s parties – is how many kids you have and what their ages are. This has always been a difficult question to answer since we lost Alex, as you don’t want to deny his existence but can’t say you’ve had three boys as it confuses things. We eventually got used to just saying we had two boys after a while for simplicity’s sake but with Josh in hospital now, it’s best to avoid any conversation with people you don’t know. As it turns out, our friend tells me not to worry about staying and to enjoy some free time. I do exactly that and manage to cram washing, hoovering, gardening, shopping, swimming, running, weights, a sauna and a haircut into the next four hours or so. The haircut was a little tricky as I can’t go to our usual barber shop as they know Josh and his troubles all too well, as all three of us boys get our hair cut there. Every time I go in they talk about Josh, which was fine when he was having his BMT but would be far too public a place to discuss his current situation. Instead, I opt for a salon where nobody knows me and it works out fine. I manage to stop the hairdresser chatting by making a point of turning off my hearing aid the moment she gets the clippers out. This tends to eliminate any small talk and I’m mightily relieved. Even the innocent questions all hairdressers ask like ‘ What are you up to this weekend ?’ or ‘ Are you going away anywhere nice this year ?’ are impossible to answer without lying. Sadly, ‘I’m visiting my 3 year old son’s grave tomorrow’ and ‘We tend not to go away on holiday as one son died in Portugal and the other’s too ill to travel ’ tend to kill a conversation. Anyway, on the way to pick up Joseph I order a Chinese which I pick up on our way home. Being a complete pickle, Joseph didn’t eat at the party but happily munches his way through most of my prawn crackers as soon as we get home. He’s asleep by 8.30pm and I’m just about to stuff myself and watch The X Factor.
